BIG Outing: Off to See 14 Wheaten Puppies!

We all know I've been overly verbose lately in the blogging department! So, today I'll just leave you with a collage of fun pictures that will, hopefully, start off your Monday with a smile!

To make the collage larger, double click on it and you will be able to see all of the pictures in a larger window. (Subscribers, you will have to go to my actual blog to do this).

Today, me, Mom, and our neighbors (Anne, Alexandra and Hunter) all went on an outing to see 'Aunt' Betsy and her 14 Soft Coated Wheaten Terrier puppies. One litter is 5 1/2 (6 puppies) weeks old and the other litter is 6 weeks old (8 puppies). We were there to help 'socialize' the puppies.

Visiting the puppies brought back memories of 17 years ago, when we visited a litter of Betsy's puppies and picked out our Winnie Wheaten.

I'm paying a HUGE price for the outing and frankly, feel like crappola, but oh how I love Wheaten puppies. It was so neat to go, and I am grateful that I could go at all because the last couple of years I have not been able to go visit her puppies. This year she had TWO litters at the same time so it was really fun! This is my second non-doctor related outing this summer.

When we arrived home Asher was not sure what to think. He sniffed, his body became rigid and he wasn't sure if he wanted to have anything to do with us! I told him he was still our number one and we weren't bringing any new puppies home!

Here are the picture descriptions:

Row 1 (L to R): Me, holding a puppy; Miss Alexandra snuggling up to a puppy; Puppy Kisses!; Getting my fingers chewed on with those sharp little teeth--Ouch!

Row 2 (L to R): This puppy was born lighter than all the rest. I had a special affinity for this little one because she had purple yarn tied around her neck (all puppies are 'marked' using a ribbon or yarn color to tell them apart). When we picked Winnie she was the purple puppy in her litter; All tuckered out after all that playing!; Alexandra getting an 'Eskimo kiss'; More tuckered out puppies.

Row 3 (L to R): Piled on top of each other--we wish we had taken a picture at the end when all of the puppies piled on top of each other to nap. It was hilarious! Each litter had a separate kennel and curled up all together to rest.; Hunter and Alexandra; Hunter and Alexandra again! I think they had fun!; Aaaah, nap time.

Row 4 (L to R): Hunter and puppy; Me in my Lafuma with puppy; Alexandra and Little Boy Blue (boy with the blue ribbon) who got injured today--as mom reached to lift a puppy off of my lap, she stepped on this puppy's leg and he was still limping when we left--we are hoping that she did not break his leg. She feels heartsick over the whole ordeal; Anne, Hunter and puppy!

Hope your week is off to a good start. I'm starting to really dislike Mondays!

Thanks to Mom for all the great pictures! She's getting pretty savvy with that digital camera!

Blessings,

Emily

Weekend Lyrics: Anyway

Anyway
by Martina McBride

You can spend your whole life building
Something from nothin'
One storm can come and blow it all away
Build it anyway

You can chase a dream
That seems so out of reach
And you know it might not ever come your way
Dream it anyway

God is great
But sometimes life ain't good
And when I pray
It doesn't always turn out like I think it should
But I do it anyway
I do it anyway

This world's gone crazy
It's hard to believe
That tomorrow will be better than today
Believe it anyway

You can love someone with all your heart
For all the right reasons
In a moment they can choose to walk away
Love 'em anyway

God is great
But sometimes life ain't good
And when I pray
It doesn't always turn out like I think it should
But I do it anyway
Yea - I do it anyway

You can pour your soul out singing
A song you believe in
That tomorrow they'll forget you ever sang
Sing it anyway
Yea, sing it anyway

Yeah, yeah!

I sing
I dream
I love anyway

Why I chose these Lyrics: I'll admit that while Martina McBride has a decent voice and some decent songs, she's not one of my favorite country music artists. I'm much more likely to turn to the Dixie Chicks, Faith Hill, Trisha Yearwood, Garth Brooks, Josh Turner, Alan Jackson, Rascal Flatts and the like.

Still, this ended up being the first song I downloaded for 99 cents from iTunes. Melissa asked me, 'Have you heard the new song by Martina?' I said, 'No, but I'm not a big Martina fan.' She replied, 'Me neither, but this is a really good song.' So, I trusted her (as we both love music and both love a lot of the same music) and downloaded the song without having previously heard it. I figured for 99 cents I didn't have a lot to lose right? It wasn't going to pay for my Ambien or anything! To date, I've only downloaded two songs--this one and one other one that Melissa recommended.

And yes, I admit that country is one of my favorite genres. This liberal, Jewish girl from the North grew to love country music during her days at Davidson. It's hard to live with a girl as southern as Loralea and in a place where most of the radio stations only play country music and not learn to like at least some of it. Loralea is solely responsible for my 'country music conversion' and much of my country music education, along with Marla and others. Somehow Carrie never converted to liking country--I'm not quite sure how one does this while living in the south for four years!

Now I like country because compared to most new popular music today, at least the artists can sing and you can hear the words over the music in the background! I'm starting to feel like an old fart, but honestly when I turn on a pop station I think what is this rubbish? Now I know how my parents felt when I didn't want to listen to NPR and wanted to turn up Debbie Gibson, Whitney Houston, or whomever else was on the pop scene! Although, these folks seem fairly benign when compared to the music hitting the radio waves today.

But, why I picked this song. That was the point right? First, I like it because Melissa introduced it to me. I like music and songs that remind me of a certain person (like Rain reminds me of Sarah and Bob) and make me feel connected to that person.

Written after Hurricane Katrina, Anyway, when belted out by Martina McBride (the little country singer with the huge voice, as she is known) speaks volumes about the human spirit. On Friday nights when I pick my Weekend Lyrics, I find I'm turning to lyrics about God more often than I had expected I might.

This song reminds me that no matter what, God is there through our suffering. I do not believe in a punishing God--a God that 'chose' me to get sick. What I do believe in, is a God who loves us through our suffering. This may manifest in the form of a postcard from my cousin Dana on a particularly rough day, an email from a friend, a beautiful sunset, extra cuddles with Asher, a new CD filled with glorious music, a break in pain, a delivery of flowers, a moment of clarity to write, a good night's sleep, a great book on tape or whatever it is my spirit seems to need that day to 'get through'.

Somehow, without fail, when I reach my lowest moments something happens that shows me the beauty in life here on earth. It can be something big or something very small that reminds me that God has not forgotten me. I'm always awed and humbled.

Anyway reminds me of the victims of Hurricane Katrina and the power of their spirits. How does anyone face such devastation and wake up to face another day? How do the people of Africa still smile and still have hope? How do we wake up the next day and the next day after we lose someone we love? I think at some point in all of our lives we face a time when we wonder what we are getting up for or we feel that each day we are just getting by: a new mother with post-partum depression, my own mother trying to work and take care of me after my gallbladder surgery, the times when a marriage is failing or has failed, and on and on.

On a more personal level this song reminds me of what my friends and I with chronic illness face. At times I have seriously wondered why in the heck I get up every day and think it's going to be better than the day before. I wonder what in the world makes me get up and give each day a try. I wonder what makes me think I can find healing. I wonder why I do this, why I still have hope, why I try so hard, why I keep fighting. I know the why is beyond me, that it is God working within me giving me my spirit and my strength when I do not think I have it.

For about a year I met with a spiritual counselor who taught me that when we feel that we cannot sing our own song, God and others will sing it for us, until we are strong enough to sing it again. I love this analogy. It couldn't be more 'right on'.

Many of my friends have commented on my amazing spirit. They say, if faced with a similar situation, they would whither away, fall into the depths of depression, not be able to handle what I have handled.

In reality, I think we handle what life gives us. I don't think I've done anything amazing, especially after being a longtime member of DINET. And especially, when being aware of the greater suffering occurring around the world. Right now, my thoughts keep returning to the Utah miners who risked their lives, and those who lost their lives, trying to save their six fellow miners. That is true courage, true spirit, true grace. We, as human beings, step up to the plate in amazing ways, in ways we never thought we would be able to when life throws us a curve ball.

I just do it. And so do the rest of us. No, life isn't what I wanted and it is hard. As my friend Anne says, "God doesn't always give us what we want, but he gives us what we need." Like Martina says, I keep hoping, I keep dreaming, and I keep loving anyway. . .because in reality there is no other way to keep on keeping on.

Blessings,

Emily

Photo: Our ever-expanding Rudbekia patch. Man, do these flowers just spread and spread year after year!

MUST READ: Under Our Skin: The Untold Story of Lyme Disease

Under Our Skin: The Untold Story of Lyme Disease

A fellow DINET member and Lyme patient posted about this upcoming documentary (to be released this fall) on Lyme disease.

I really encourage you to take the time to go to this website. Click on the link below and you will be taken to the main page which allows you to view the trailor for the documentary. It is incredibly moving and powerful.

Lyme is thought to be the fastest growing infectious disease in America, yet it is mostly ignored by the traditional medical field. That is a staggering number of people being ignored, untreated and dismissed by the medical profession. Also, we have little to no research available on how to treat this disease.

While the medical world debates whether Lyme disease is 'real' or not we continue to lose time. Again, we as patients are left waiting: waiting for the disease to be recognized, waiting for better treatment options to become available, waiting for doctors to open their eyes, waiting for funding for research. I am convinced that, in time, Lyme disease will be fully recognized as a disabling illness that was once dismissed as 'hogwash'. This is the path illnesses such as Chronic Fatigue Syndrome, Multiple Sclerosis and other diseases have followed. So, I have faith that some day soon we too will recognize Lyme Disease as real.

I pray that this documentary will open eyes and raise awareness. Take the time to watch the trailor. You will not regret it. Prepare to be moved.

http://www.openeyepictures.com/underourskin/

The site is PACKED with information. It's incredibly well-done and comprehensive, perhaps the best site I have found to date to refer friends and family for more information on this illness. Also, they share the many, many faces of people with Lyme disease.

Following are links to other topics on the site:

Film Description: http://www.openeyepictures.com/underourskin/uos_description.html

What is Lyme Disease: http://www.openeyepictures.com/underourskin/uos_background.html

Sample Characters: http://www.openeyepictures.com/underourskin/uos_characters.html

Faces of an Epidemic: http://www.openeyepictures.com/underourskin/uos_faces.html

Resources (packed with links): http://www.openeyepictures.com/underourskin/uos_resources.html

THANK YOU Open Eye Pictures for helping to raise awareness and to educate others!

Blessings,

Emily

Thoughts on Writing: Poet Kevin Young

Finding a middle ground: Writing is a necessity, you know. It's not just fun, though it can be fun, and it's not just torture, though it can be torture, too. I think the point is really to find that middle ground between pleasure and necessity, and for me that's what a poem is. --Kevin Young--

As I am sure you have all noticed I have been very 'blogger happy' lately. I find that I want to write and write and write. This is both a good and a bad thing, as I think Kevin Young stated so clearly.

I write even when I really 'should' be resting or trying to get to bed earlier than 3 am. I write when I feel really sick, but keep writing anyways. I write in bed sitting at my computer and certainly aggravating my neck pain more (Stupid, stupid, stupid!). I write when I 'should' be making telephone calls to doctor's offices, or emailing a friend, or calling a friend, or tackling the ever growing piles of papers around the house.

But somehow I cannot stop.

I did not anticipate when I recommitted to blogging that I would want to write so much. I didn't anticipate my subscribers would be in for so much reading!

REMEMBER: Read only the posts that interest you!

I have now added this new section, in addition to Weekend Lyrics, as a way to reflect on the process of writing. Today it is Kevin Young's thoughts.

As I enter this new journey of finding and using my voice again, I struggle to find the balance of which Kevin Young speaks. I write rather than email or call a friend. I am still learning. Please bear with me! At the end of a long day of making calls to doctor's offices or other 'business' calls, I find there is very little of 'me' left to give to others. I end up wanting to be alone with my writing, yet hoping that my writing will keep me connected to those I love.

At this point, writing and blogging is nourishing me spiritually, emotionally, creatively and intellectually in a way that I have not felt nourished in a very, very long time. And as my friends Carrie and Ariella have noted, it is a major sign of improvement that I am even able to write again. For so long I was too sick to even do the littlest amount of writing. I used to journal almost every day starting way back in high school.

When I lost the ability to write, journal, and send oodles of snail mail letters, I lost a part of me. I am finding 'me' again. I am finding my voice again. It brings me so much joy. I feel that I have been holding in these words for so long and they are finally able to spill out of me. It feels so good to write what is on my mind, rather than have the words spinning around in my head keeping me awake at night. It helps me purge the emotions I am dealing with. Now, I just need a few more hours in the day to write so that I won't have emails I need to write spinning around in my head. I literally write email responses and blog posts in my head when I am too sick to type! (The Gmail folks are pure genius--do you think they could come up with a system that reads what my brain wants to say and transcribes it for me? And then mails it to the person?)

I've lost so much of 'me' to this illness that being able to write again feels like finding 'me' again, finding a part of me that is not just illness. It is also an outlet that gives me a tangible finished product--unlike the ambiguous and intangible journey on which illness and relationships take us.

Thank you for reading, for cheering me on, and for encouraging me to find my voice again. I especially thank my mom, who quietly knew that I needed to begin writing again, but waited until my slow deliberate self said to her 'I think I need to write'. She breathed a sigh of relief and said, 'Yes.'

The bottom line is that ultimately I write for me: with the hope that my writing will impact others, move others, and connect me to others. But it's hard to strike the balance, especially with my limited energy, between writing or emailing a friend. Right now, my energy dictates that I must choose one or the other. Choosing writing feels selfish, especially after I've spent the whole day seemingly taking care of me--by making health calls and doctors calls, or just using my energy to get dressed, eat and take a bath. None of these 'selfish' things nourish me though. Writing does. So, somehow taking care of me in this new way for the first time in a long time feels really good. I'm trying to find the balance between feeling guilty (Oh, that Jewish guilt gets me every time!), taking care of others and taking care of me.

This is my new journey...

If you've figured out the balance between taking care of yourself and taking care of others and feeling guilt-free about it...PLEASE fill me in on the magic formula!

Kevin Young was interviewed on PBS during the News Hour with Jim Lehrer. I have included more of the text of the interview (a couple of his poems). One is on grief--which is so fitting for so many people I know. The other is on music and how he uses poetry as music. It reminds me of how important music is to me and so many others.

Enjoy!



This is "Redemption Song," a poem about personal grief but also about the transformative power of beauty and the healing power of time.


'Redemption Song'

Grief might be easy
if there wasn't still
such beauty--would be far
simpler if the silver
maple didn't thrust
its leaves into flame,
trusting that spring
will find it again.
All this might be easier if
there wasn't a song
still lifting us above it,
if wind didn't trouble
my mind like water.
I half expect to see you
fill the autumn air
like breath--
At night I sleep
on clenched fists.
Days I'm like the child
who on the playground
falls, crying
not so much from pain
as surprise.


I can't play any music, so I'm sure that's why I write about music, because I think it's a beautiful solace-producing thing. I think poetry, though, approaches music, and for me, the best poetry has its music in it. It's not behind it like a song where the lyrics are up front and the band is behind, but it's all mixed together.


'April in Paris'



This is taken from "April in Paris" a poem about seeing the jazz musician Lionel Hampton a few months before he died.


Playing the subtleties
of silence, Hampton traces,
like a government agency,
the vibes--quietly--
his wands a magic,
a makeshift. Arthritic solos
hover like a bee
above the flower, finding
the sweet center.
Two days before Easter, Monsieur
Hampton plays the changes,
offering up
songs read off
a napkin bruised with lyrics:
What did I do
to be so black and blue?
his voice wobbles
along the highway
called history,
flying home.
The sax player stops
between tunes to dab
a handkerchief at the drool
gathering his chin.
Such
care. The mind's blind
alleys we wander down.
This is enough, just--
This is Paris--



ALL text and quotes taken from the following link:

http://www.pbs.org/newshour/bb/entertainment/jan-june07/young_03-01.html

To listen to the interview with Kevin Young or to hear him read his poems (or to read the complete interview) please visit the website listed above.

Blessings,

Emily

Photo: Yes, another picture of a gladiola!

Making Patients Wait...

I have continued to have back and forth conversations with Dr. Pain's office, but today's conversation with a nurse reminded me of something that happens all too often in health care.

First here is a brief synopsis of the past week:

Last Wednesday (after my Saturday night page to Dr. Pain): I called the pain clinic to speak with a nurse. I received voicemail and did not get a call back.

Thursday: Received a call back from one of the nurses in the office (the only nice person in the office I fear!). I described my 'failed trial' of Neurontin, told her about the other medications my ANS specialist had recommended, asked if Dr. Pain would please contact my ANS specialist directly to discuss my case. She said he would be more than willing to do so. I gave her the phone number AND email address of my specialist (who, I am now getting tired of writing out ANS specialist, so I will call him Dr. ANS). I clearly stated that I knew Dr. Pain was leaving town on Monday (today) and needed to contact Dr. ANS by end of day Friday. I also clearly noted that Dr. ANS would be out of town the two weeks following Dr. Pain's vacation. Of course, Dr. Pain was not in the office on Thursday.

Friday: Received another call from Dr. Pain's office asking me to call. Also received an email from Dr. ANS stating that he was looking forward to speaking with Dr. Pain. Called Dr. Pain's office and was told he had prescribed Lyrica. I said, "Okay, good. Does that mean that he spoke with my specialist?" Nurse Pain (who is super rude--when I went in for my first appointment I politely asked how long the wait might be and she curtly replied: "It will be a while". I gently said, "What is a while? And she said, "It will be a while." Note: Patients have the right to ask how long a wait will be and to be seen in a timely manner (these 'rules' are even posted at my PCP's office!))

Back on track here: The nurse replied in response, "Was he supposed to contact your specialist?" I said, "Yes." She said, "Well it is not here." I tried to ask how he made the decision about the medication, dosing, etc. I explained that I was very frustrated that Dr. Pain had not contacted Dr. ANS. She said, "Well, I get frustrated too." Grrrrrr....I asked if there was a number that Dr. ANS could please call Dr. Pain at before day's end. She said, "Oh, no he's gone for the day." Remember: Dr. Pain is leaving for vacation Monday and did not call Dr. ANS! I ask also if we will be able to get this medication approved by MA and she grumps that she doesn't know and we won't know if we don't try will we? Because Dr. Pain uses this medication often (Lyrica is the new 'hot' pain med) and deals with MA frequently, I figured she should have an answer to this question.

Please note that most medical mistakes in this country are due to a break down in communication. Dr. Pain made his own decision without calling Dr. ANS and Dr. Pain's nurses were not 'in the loop' as to what had transpired. When I emailed Dr. ANS about the Lyrica, he said that would be okay to try, but he did not agree with Dr. Pain's dosing choice. Of course I trust Dr. ANS and will follow his dosing schedule--but it gets a bit tricky trying to walk the tightrope between the two doctors, especially Dr. Pain who wants things his way!

Today: I call Dr. Pain's office and leave a message for the nurse. I cancel my appointment for next week (since I will not have started the new medication) and ask how long after I start the medication I should wait to schedule an appointment with Dr. Pain. I again repeat that he needs to call Dr. ANS before I come in for another visit (I really hope this will prevent some of his hostility!)

Nurse Pain tells me that she has called my MA Nurse Case Manager (Toni) and will fax her the dictation as soon as she has it available. I ask when that might be (because it should have been done when he prescribed this drug!). She says it will be at least a few days. I tried to pin her down and see if basically it would not be done until AFTER Dr. Pain returns from his trip. This means at least one week until he does the dictation, a couple of days for the transcription, time for Toni to type up a request for the MA Medical Director, and then however many days it will take to get an approval or denial (If denied...well, we don't even want to go there. Please pray on this one!). She curtly says maybe Dr. Pain dictated before he left for his trip but she just hasn't received the transcription yet. But, she did not know.

The point of this story (yes, there really is one) is that patients spend so much time waiting.

What I felt at the end of the day was deflated and frustrated because I felt that MY pain didn't matter. That waiting a few more weeks for a medication doesn't really matter. That my life and quality of life aren't that important.

So many times we, as patients, hear: "Come back in six months and we'll see if you're any better. Then, maybe we'll do some testing." or "Try this and come back in three months." There is no sense of urgency. No sense that the passing of time and the waiting make the patient feel that their pain, their suffering matter. This is literally how I spent the first 6 years of my illness until I met Dr. ANS.

I really feel that Dr. Pain should have taken care of the dictation BEFORE he left for his trip. He should have called Dr. ANS. I realize he is busy, but I don't believe you go on vacation and leave a patient hanging. He prescribed the drug, but I can't GET the drug because he didn't do his job.

I am in the midst of watching (in small parts) a series that was on PBS last fall called Remaking American Medicine. It is FANTASTIC. First, it sheds light on what is so very wrong with our health care system, yet it gives us hope that we can change it. I do believe that we have the best doctors in the world and the best tools in the world in America. But we do not have access to them. And doctors and patients are in crisis. I fear the system will fail us completely before it changes for the better. The episode on Johns Hopkins is especially moving--and I may have just found my new passion in health care!

In the current episode I am watching called 'Do No Harm' one of the interviewees comments that there is no other place or situation in life in which we lose as much control or authority of our own lives as we do when we step into a doctor's office or a hospital. Right on!

Tonight I'm having a great deal of pain. We had the blessing of company for dinner (a neighbor whom I adore) for the first time in ages and pain 'got me' by the end. And I just keep thinking, how am I going to make it to NY in September without a medication? I also keep feeling like why doesn't my pain matter? Why isn't it worth treating NOW rather than in a few weeks or whenever he gets around to it? If Dr. ANS was able to do it (but he can't because of MA rules) the prescription would have been called in immediately and the dictation done. He would have called MA himself.

Making patients wait...

It makes us feel devalued and as if the fact that we are sick doesn't matter.

Please note that my PCP, Dr. ANS. and Lyme Doctor (Dr. Lyme--how's that?) NEVER devalue me. They never take away my power. They trust me. They consult me. Dr. ANS says I wait out medications too long rather than letting him know. Why do I do this? Because before him, no one ever cared. We would call and they would say, "Keep waiting it out" or we would get NO call back. I am so blessed by these doctors. I do not want to say that ALL doctors are like Dr. Pain, but unfortunately, in my experience MOST are.

It's hard not to wonder where I might be now health-wise had I found Dr. ANS years earlier. Maybe we would have discovered the Lyme long before I got so sick and before it caused so much neurological damage. I don't ask a lot of 'what ifs' and most days I don't ask 'what if'--this is the path that I have been given and I am grateful that I have Dr. ANS now.

Most, if not all, of my friends from DINET are not as fortunate as I am when it comes to medical care. I'm one of the lucky ones. It is so disheartening to know that I have something that they can't get and don't have. Complaining about Dr. Pain seems like making a mountain out of a molehill compared to what I've been through in the past and compared to what my friends go through. Still, I think it is so important use what is happening with Dr. Pain as a microcosm of what is happening on a much, much larger scale day in and day out to patients.

I want my life, my pain, my well-being to matter. I hope more doctors learn to 'get it right' like my PCP, Dr. ANS and Dr. Lyme soon.

Is this too much to ask?

Blessings,

Emily

Weekend Lyrics: Rain

Rain
by Patty Griffin


It's hard to listen to a hard, hard heart


Beating close to mine


Pounding up against the stone and steel


Walls that I won't climb


Sometimes a hurt is so deep, deep, deep


You think that you're gonna drown


Sometimes all you can do is weep, weep, weep


With all this rain falling down


Strange how hard it rains now


Rows and rows of big dark clouds


But I'm holding on underneath this shroud


Rain



It's hard to know when to give up the fight


The things you wanted that will never be right


It's never rained like it had tonight before


I don't want to beg you baby


For something maybe you could never give


I'm not looking for the rest of your life


I just want another chance to live



Strange how hard it rains now. . .





Why I chose these Lyrics: Sarah and Bob first introduced me to this song by Patty Griffin on a mix CD they made for me. The CD came during a time of great emotional, spiritual and physical struggle. Sarah and Bob went through all of their CDs to choose songs they thought I might like, and Bob topped off the mix CD with a gorgeous label and case decorated in butterflies. I have played 'Sarah and Bob's Butterfly Mix' over and over again--but this song and this artist quickly became my absolute favorite. In those days when tears flowed, I would play this song over and over and over again. I continuously find comfort in Patty's music.



I chose this song before I knew this was going to be a 'rainy' week--emotionally, physically, and literally! We finally got some much needed rain in the form of fabulous thunderstorms. When I picked it I also did not think about the coincidence that Friday was Sarah's birthday and she and Bob were ultimately responsible for introducing me to this artist. Nor did I realize how exhausted I would be at the end of the week from fighting the medical system. Still, even though it's not nearly as 'rainy' as it has been before, I wanted to use this song as my introduction to this artist that I love so much. I didn't know, in life, how hard it was going to rain for me or for my parents or for my friends (Jeannine and Melissa this one's for you girls!) I'm not naive, and I never EVER thought life is easy for ANYONE. Still, I didn't know the dark times to come or how deeply such lyrics would speak to me in those times.



I now own three Patty Griffin CDs and am, of course, convinced that I need all the rest of her CDs! I chose 'Rain' because it was the first song I ever heard by her, because it has the power to speak my sadness in difficult times, and because ultimately, 'Rain' is the song that made me fall in love with Patty Griffin.



Patty's voice is: Raw. Rich. Robust. Real. Powerful. She harnesses her powerful voice to create gorgeous melancholy, mellow and fluid melodies that flow from her mouth. The clarity and fluidity of her voice stand on their own; she needs no 'loud background' noise to cover-up for a voice that might be lacking in some aspect. It is Patty's voice that I love so much. And, on a rainy day her melancholy lyrics comfort the soul. A friend challenged her to write a 'happy' song on her latest CD but even her other lyrics, while speaking of pain and heartache, manage to remind me that we do and can endure.



We may feel that it has never rained this hard before--and Patty gives us permission to weep, but she also reminds us that we will hold on underneath this shroud.



Blessings,



Emily


Photos: My beloved gladiolas! They've been sparse this year, so I think next year it is time for new bulbs! I have a special affinity for this patch of gladiolas in our yard because for a time, I was able (with LOTS of help from my mom) to manage a small flower patch. Gladiolas were the first flowers I planted, and I absolutely fell in love with them. They remind me that maybe someday again I will be able to plant a little flower patch. And, of course, they are PINK!

Part II: Crash, Boom, Boom!

"Wow Em! You look green!"

--Jeannine, my best friend since 7Th grade, remarking on how I looked last Thursday when I was 'crashing'--

"Well, I've seen you pale recently, but it's been a long time since I saw you looking a different COLOR!"

--Jeannine, commenting Wednesday evening on how I looked last week--

Well, for some reason Feedburner has been a bit tempermental. The post I most wanted to go out recently letting folks know I was down for the count, did not got out to subscribers. Sooo, you'll have to go to my blog itself to read Part I of Crash, Boom, Boom!

Warning: Part II of Crash, Boom, Boom! which follows is definitely a rant. I'm frustrated, tired, worn down and just plain grumpy. However, the post is worth a read if you want to know the answers to such burning questions as: What does my neck pain feel like? Why is being chronically ill a full-time job? Why do we need a serious makeover of our health care system? And, a question I cannot answer, why are some doctors so hateful? (This is NOT a new question for me--I'm not sure why it even surprises me anymore when I am treated so miserably).

We DID since then figure out the cause of my 'crash'. Turns out it was the Neurontin--the medication I was trying for neuropathic pain. Since stopping the medication we are now certain is was making me worse. Oddly, my pain is better off of the medication than it was on it! I'm still feeling pretty miserable, but I'm not nearly as sick as I was and I was able to visit with my Uncle on Monday and Tuesday--just in much more limited time slots than I would have liked.

What makes it so hard to discern what is causing what with me is that I have basically the same reaction to everything. If I do not tolerate a medication or treatment, I have the same constellation of symptoms--basically an ANS storm and a lot of looking green! So, it really doesn't matter WHAT the side effects are supposed to be for the 'normal' population, I will most likely react with and ANS system going nuts, as I did this time around. It's also hard because we never quite know when the medication will build up in my system enough to create a reaction--this time it was about three weeks, which makes sense for a drug like Neurontin, which takes about a month to know whether it is working or not.

I give my mom all the credit this time for her 'mother's intuition' in solving the puzzle. By Friday of last week I was so sick and pale (your choice of color--gray according to my mom, green according to Jeannine), that it seemed unlikely it was the antibiotics, as I had not increased my dosage.

I put in a last minute email to my ANS specialist hoping to catch him Friday evening before he left the office (he often emails around 6:30), but quickly got an out-of-office reply. Just my luck!

I opted, on Friday night, not to take the Neurontin.

I was up all night until 5 am, feeling agitated, anxious, jittery and could not sleep. It was as if I was having some sort of withdrawal symptoms. I knew to wean off of this medication to avoid a risk of seizures, but I was taking the lowest dose possible. So weaning, in effect, meant going to a dosing schedule of every other day for a few days.

I was so relieved on Saturday afternoon when I woke up and logged on to my computer only to hear the familiar Gmail 'beep' signifying a new email from none other than my wonderful ANS doctor. He happened to be back from his trip and on email--thanks be to God.

He said based on my response to the Neurontin I should definitely stop it, and could most likely stop it abruptly with no problems.

I emailed him back, hoping he might be on email later that day to tell him what had happened to me off of the drug (a call into the pharmacist suggested that my symptoms were possibly withdrawal so I needed guidance on whether or not to take the medication every other day instead of stopping abruptly). I also left him a voicemail, hoping he would call. I DID NOT want to have to page him, as he was NOT the prescribing doctor for this medication.

As Saturday progressed we felt more and more uncertain as to whether or not I should take the Neurontin or not. I was super sick on the medication and very sick going off of it. What was the best strategy? Stop it and get it over with? Or take another dose every other day and keep some in my system? I leaned towards just getting it out of my system, but dreaded another night like the previous one.

I did not hear back from my specialist, and at Mom's suggestion paged the local pain clinic and doctor who had prescribed the drug.

The following enraging discussion ensued:

Doctor: "Yes?"

Me: A quick description of the reaction to the medication, the suggestion of my specialist to stop it, and my question regarding what to do about stopping the medication considering the withdrawal effects.

Doctor: (YELLING) "If you want to talk to me about Neurontin, do not call me on a Saturday evening. If you want to talk to me about Neurontin, call my office on Monday. Do not call me on a Saturday evening."

Me: "But, I need to get off of this medication because it is making me sick, but I am having withdrawal effects."

Doctor: "How much Neurontin you taking?" (He is not American, speaks broken English and is often very difficult to understand).

Me: 100 mg

Doctor: (YELLING) "That is not possible. Absolutely not possible to have withdrawal at that low of a dose. Absolutely zero percent chance of that happening. Not possible."

Me: "Then what should I do about dosing?"

Doctor: "Do you still have Neurontin left?"

Me: "Yes"

Doctor: "Well, then keep taking it."

Me: "But I need to stop it. It's making me sick. I need to know how to stop it and go off of it."

Doctor: "Just stop it then. OKAY??"

Me: (having given up at this point) "Okay."

Doctor: "Okay then."

Me: "I did not call to get yelled at." (I said this very calmly!)

Doctor: "Have a good evening."

Total phone time: 2 minutes

Did he ever think that I wouldn't call on a Saturday evening unless I felt absolutely desperate? Did he ever think that HE prescribed this medication so it is HIS job to help me if I am reacting to it? How was I supposed to have a good evening when I felt so sick? And, when did it become okay to yell at patients? Did he remember that HE chose to be a doctor in a town where he would be on call? He could have stayed in Texas in a big hospital where he wouldn't have had to take as many weekend calls.

I am one of the first people to say that I have empathy for people on all sides of the health care world--the caregivers, the doctors, the patients, the nurses, etc. Doctors and nurses are overworked and overtired. They are stuck in horrible binds with the insurance companies. Being a patient is hard work too. But, there are lines. There are boundaries that should not be crossed. Yelling at a patient is one of those.

What happened, oh what happened, to the Hippocratic oath?

This call follows an absolutely horrible first visit with this pain specialist. However, I'm caught in a bind--he is the only pain specialist in town who works with neuropathic pain AND my ANS specialist cannot prescribe any medications that need pre-authorization from MA because I have not seen him in the past year. My ANS specialist knows my case inside and out, and in the end, he always seems to know what is best for me--but I'm stuck trying to see a doctor locally to go through the hoops of MA.

On Sunday, my ANS specialist emailed me regarding my phone call and email to him on Saturday. His email popped up just as I was on the computer, so I said, "I'm online, will write right back!" He wrote: "I'm surprised that you are reacting to such a small dose, but I guess I shouldn't be, as that has been a consistent pattern for you before. I would agree that these side effects sound like withdrawal symptoms." It made me laugh in a difficult time. Note: He said my symptoms certainly fit those of withdrawal. We then discussed the next possible options in drug treatment.

Somehow, I feel like he always picks up the slack. He's always the one who has to pick up the pieces that the other doctors don't want to deal with. He does it with such humility and grace (and humor), never seeming bothered. It's as if he's resigned to knowing that most doctors won't deal with difficult cases or cases that don't fit in their 'boxes'. I feel guilty, but I think somehow he has accepted that this is part of treating patients like me--the kind who NEVER have things 'go as expected'. He will now monitor whatever drug I am prescribed. This means, as he says, I may NOT start it until he is back from his summer vacation so that I am not stuck in a situation where I cannot be in contact with him! This is an ongoing joke between us--he will write, "I will be out of the office such and such dates so I do not want you starting any new medications while I am away."

For the past few weeks, I've been feeling like I'm drowning in this MA frustration. It's eating at me.

Today, I spent the entire day of my 'awake' time calling the pain clinic (no call returned), the pharmacist (angel pharmacist out of town), and my MA nurse case working trying to find the answer to what should be a simple question: Are Trileptal or Lyrica covered by MA? If so, what are the pre-authorization requirements? It was me who told the MA nurse that Lyrica is covered only if you 'fail' at Neurontin.

Why isn't this information readily available, especially to the nurses who work for MA?

So, I ended the day with no answers and more frustration. The Ambien ordeal is on hold for now because I must recuperate from this medication and find a new one to try before we travel to NY for my Lyme appointment in late September.

And if you're actually still reading this rant, I might as well finish my story, eh? The first visit with the pain doctor--a pain in the toosh!

At my first visit I spent 3 hours waiting to see him for 20 minutes. I spent quite a bit of time with a nurse and provided her with documentation of my underlying conditions and a bulleted list (as suggested by my ANS doctor) of how moving my neck creates pain and what symptoms follow (i.e. pounding heart, sweating, dizziness, etc.).

Usually, I go into appointments alone but since I had been waiting for hours, the nurse offered to bring my mom back to keep me company. I am glad that she was there to witness the appointment because sometimes I lose sight of how I was treated or take things too personally. Later, after I told my ANS specialist about the appointment he joked that it was just too bad I was so intimidating in person! Ha!

Immediately the doctor--whom I will call Dr. Pain--came into the room talking very loudly and saying (in reference to the information I had brought him on my underlying conditions), "I do not know anything about these illnesses. I do not know about Chronic Fatigue Syndrome or Orthostatic Intolerance. I can only treat your pain. Do you understand? I can't treat your other illnesses. I can only treat your pain. Do you understand?"

After he said this several times my mom, who NEVER asserts herself to a doctor said, "Yes, we do. We're intelligent. We understand." My jaw about hit the floor.

Dr. Pain says, "Okay good. Because people come in and expect us doctors to have the answers to everything."

Now it was my turn to assert myself. I said, "I don't expect you to have the answers to everything. I'm just asking you to treat my pain."

Dr. Pain: "Good."

Me: "But some doctors also think that they DO have all of the answers."

Dr. Pain: "Oh not me. I don't have a big ego. I was born with a small ego."

And he so clearly demonstrated this on Saturday evening when I paged him, didn't he?

During the appointment he did not let me get a word in edgewise, he did not let me explain my pain or look at my bulleted list. He did not examine me. At the end of the appointment he just said, okay, I'll give you Neurontin 100 mg a day and walked out.

I had NO idea why he picked Neurontin, why he labeled my pain as neuropathic, what side effects to expect, how long the drug would take to begin working, etc.

Luckily the following week I had an appointment with my PCP who then examined me and discussed my pain and how it might be neuropathic pain. For example, I have been having pain in my elbows when I bend them across my belly or chest to fall asleep, and then they go numb. Dr. Pain did not let me explain this symptom. My PCP, on the other hand, examined me for ulmer nerve problems, carpel tunnel, etc. and when I showed no signs of those, suspected the pain was originating in my neck. I also have a lot of pulling and throbbing sensations, rather than pain which I can describe as shooting or sharp or dull or achey.

The major issue is finding something to inhibit the ANS responses I have to moving or using my neck. For example, I cannot lie on my side and rest because there is so much 'pull' in my neck that my heart begins to pound, and the vicious cycle of pain and ANS symptoms takes off. Oh how I envy my friends--when I watch them curl up in bed and feel comfortable or when I watch someone type at a computer or watch TV without it causing a barrage of symptoms. And what would it feel like to sit down in a chair without a zillion pillows propping me up in a precise position that does not create too much 'pull' on my neck?? What would it feel like not to rely on ice packs and heat and Ben Gay in addition to my Lidocaine patches? I would very much like a super-sized lidocaine patch as they do work wonders, but just not even close to enough! I wonder, I hope, I dream that I will know what it feels like to be in less pain.

Blessings to you if you've made it through these mixed up ramblings. On my part, I'm promising to be less of a Miss Grumbolina next time I post!

Emily

Photo: I thought a picture of Kermit the Frog was fitting based on Jeannine's comment. Anyways, ever since my gallbladder surgery the term 'you look green' has come up a lot, especially before my gallbladder was removed and I really did look green. I became known as 'the green girl' on DINET and then later 'the girl formerly known as green'. Unfortunately, I still turn green sometimes!

Image taken from: http://muppet.wikia.com/wiki/Kermit_the_Frog.